Monday, August 13, 2012

My Favorite Moments from the Minnesota Fragile X Picnic

Our second picnic went so well! I really feel like we are getting a cohesive group together in Minnesota. It's very exciting to see people come together and feel such a close bond, almost right away. And there's so many more of us than I thought, back when the twins were first diagnosed. I think I went a year after our diagnosis, before I saw another child with Fragile X.

It doesn't feel as rare, anymore. When I meet new people and have to explain the boys, I tend to say they have "Fragile X Syndrome?" I say it in a questioning tone, because I expect that the person I'm telling won't have heard of it. Well, I decided this weekend, I'm not going to do that anymore. I'm going to say "They have Fragile X," matter of fact, as if it were as common as autism and I expect everyone to be aware of it. We aren't as few and far between as we used to be.

Mother Nature decided to grace us with a gorgeous day on Saturday. We couldn't have hoped for more.

Here are some of my favorite moments from this year's picnic:

  • When Mary discovered her son Dan was featured in the NFXF Annual Report - the Annual Report that probably went out to hundreds of people, and she had no idea they featured a little paragraph and photo of her son.

  • When Tammy, mother of four children with Fragile X, met Sue, mother of two sons with Fragile X, and realized that Sue was the very first person she talked to, fifteen years ago, when Tammy's first son was diagnosed with Fragile X.
  • Introducing Desirae Rambeck, from the Minnesota Fragile X Clinic, to the group and then seeing everyone have a chance to talk to her personally.
  • The huge laugh we had when I tried to talk Tammy into borrowing a book, and she absolutely refused because the last time she borrowed a book from someone, her son ate a page out of it.

  • When a bunch of the kids were fascinated, predictably, by the water spout.

  • When AJ started waving the bubble wand around in the air to make bubbles, deliberately, for the first time in his life.

I love this group.  I went home exhausted but thrilled that it had gone so well.

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